We thank you for being such dedicated supporters! I want to share a couple of stories that I recently read about CF patients. The first drew me in because it had a picture of a smiling 15 year old boy. The picture reminded me of Addy. There was something about his skinny, pale, somewhat frail body that made me think of Addy’s early years. The boy in the picture was born in 1969 and passed away in 1984. In this article, his parents were writing about ways that they still, to this day, support the CF Foundation. We are so grateful! What if they had given up their fundraising efforts after his passing? It was a poignant reminder why the Johnsons need to push forward. The only reason our girls moved beyond skinny, frail pictures and into healthy teen years and beyond is because of the efforts like this boy’s family. There is no cure and we are still searching for helpful treatments for some mutations. We can’t let others down!
Another article was written by a 66 year old man living with CF. He recalled being part of the first triple combination modulator therapy, Trikafta, in 2018. Prior to that he was worn down from battling CF for decades. He had already lost both his brothers to CF and his wife and now grown sons (ages 37 and 32) had helped him sustain life over the years by banging on his chest every morning. Within 24 hours after taking the trial drug, he felt better than he had in 30 years. This is the same drug that Addy and Ava now take. The one that has improved their lung function, lessened their need for antibiotics, reduced other medications and the need for so many daily Vest treatments. This man and my girls are living more normal and healthy lives because of Trikafta. He talked about his dedication to raise money for research so others can experience the quality of life he now has. “I want to help those with nonsense mutations and others who can’t benefit from existing therapies. There is also reason to believe that our efforts may benefit other disease states. I give because the Foundation is leading the way.” These are more reason for us to continue working.
Because of supporters like you, the Johnson girls are thriving. Ava is a sophomore with wonderful grades and is beginning to think about what she wants to study in college. She contributed to her soccer team’s 16-1 season last fall and handled the pressure of playing point guard on her basketball team. She’s studying God’s word daily, learning how to be an only child since her siblings moved out of the house, hanging with kind friends, going to prom with Sam, and laughing. Oh, how she laughs!
Addy is married! That’s just crazy to say. She and Logan take amazing care of one another. They are happily making their home in Marysville as she completes her first year of graduate school at The Ohio State University studying speech pathology. She'll graduate next spring. Logan works at Colepak and they have settled in at Marysville Grace church.
Connect With Us
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
FOR YOUR SAFETY AND THE SAFETY OF OTHERS: